What We Live With: My Story of Pain, Struggle, and Hope

First; a bit of back story

I was born a month premature on November 4th of 1983. That’s when it all started.  Due to unforeseen complications I was immediately rushed to surgery due to a perforation in my small intestine. I had to have a section of it removed, my appendix removed, and go through a colostomy and then the reversal. Part of my small intestine that was completely removed was my ileum. For those that don’t know, the ileum is at the end of the small intestine that absorbs nutrients including the essential B-12. Due to this, I am unable to properly retain most or any of the nutritional benefits of food which explains my inability to gain or keep weight on.

As this happened when I was first born it was never anything I had to ‘get used to’, I was just used to dealing with pain, nausea, fun bathroom issues, among other things. A few times I suffered from a dilated loop of the intestines which can sometimes reverse on its own and sometimes require surgery to fix. Luckily for most of my childhood/teenage years I suffered with the pain and all but was able to continue on without surgery. Through it all I had seen doctors multiple times, been diagnosed with IBS along with the previous ailments, however I was not put on any supplemental vitamins or medication other than taking a fiber drink every once and awhile, so during those stages in my life I never was fully processing the nutrients that a body needs.

Six years ago that changed. My  symptoms had started getting worse. The pain was at times unbearable leaving me curled up in a ball in tears. I was sent to a hospital once even though I didn’t have insurance. The hospital took an X-Ray, pumped me full of morphine, and sent me on my way two days later with no real explanation of what happened or any prescription for the continual pain I was. What they did send me home with was a bill for $10,000. The most expensive hotel bill ever. So to those who say that you aren’t treated differently if you don’t have insurance, I can attest to the fact that you don’t have any idea you are talking about.

A few months passed and it wasn’t getting any better. Fortunately by this time I was able to get insurance and get to a doctor for another round of Upper GI x-rays and a colonoscopy. The colonoscopy did not reveal anything, but the Upper GI. I was diagnosed with diverticulitis, which are pockets of growth that form in the intestine. They can cause pain, bacterial infections, and can lead to perforations in the bowel. When my wife and I saw the X-Rays we were shocked to see that the one inside me had grown to about the size of a baseball off of my small intestine. I was referred for surgery to have another intestinal resection.

The surgery went off well. They were able to remove the diverticulitis and do a resection on the small intestine. Within a few days I was up and eating again. A bit of residual pain from the surgery, but other than that, I felt alright. Unfortunately, that did not last as long as I would have hoped.

After being discharged from the hospital and returning home, it wasn’t long until I knew something was wrong. I was unable to keep anything down. Then even when I wasn’t eating, I would still vomit, which was a dark green color, which to me didn’t seem to be a good sign. Then I noticed that my stomach had started to extend to a much larger size than normal. After that came the pain. Now, due to the fact that I’ve dealt with pain all my life, I am able to withstand quite a lot of it. Not this time. Have you ever heard or read a description that goes ‘The pain was brilliant’? That’s how I would describe this pain. Brilliant to the point that the pain itself felt like a sentient figure, something that knew, and was alive. I recall a moment of terror, laying on my couch with a cold wet washcloth over my forehead, feeling like my body was letting go and seeing nothing but an overpowering whiteness take me over. We called the doctors to which they first responded that it was possibly the medication and they would change it. That wasn’t it.

Lookin’ good Kloipy! Lookin’ good!

Finally after a few days of this, I had to tell my wife one of the hardest things I’ve had to tell her. I asked her to take me back to the hospital. I felt so depressed and guilty to have to leave her once again but I knew if I didn’t go in, I was going to die. Which turned out to be much truer than I could have imagined.

As it turned out, for some reason my intestine had gotten another dilated loop in it and due to the time we had spent at home, another long section of my small intestine had stopped working and had literally died and started to rot inside me. The one point of luck was that it had not yet perforated, though was almost a pinpoint away from it. The solution was another surgery to remove this section that had died, leaving me with just a shade above of not being permanently fixed with a colostomy bag. As if this wasn’t a bad enough situation, the best was yet to come.

I woke up in the hospital in the middle of the night, completely drenched in sweat. I walked into the bathroom, turned on the light, and noticed the growing spot of blood on my hospital gown. After running tests, they were able to determine that I had gotten an infection in the surgical site. They started pumping me full of antibiotics through my PIC line but a decision was made that a more, how should I say this, extensive measure, needed to be taken. The next afternoon a doctor came in to the room and explained that the best way to speed up the healing of this infection would be to open the wound and let it heal from the inside out. I figured this would be accomplished using a local anesthetic, which I was also wrong about. Now the incision from my new surgery ran from above my belly button down to my groin, and was affixed with staples. The vision of this procedure still haunts me sometimes. They had me lay back, hold on to the railings, and grit my teeth, as they removed the staples and pulled the wound open.  This was yet another pain that I can’t really explain well in words. Just know that it does not feel good at all.

Ok, looking back on this picture, it is hilarious

After that was done I was fixed with a wound vac and after a few more weeks I was able to be sent home. I will never forget the feeling of leaving the hospital after over a month of my stay. The day was bright and warm, and the instant I got into the car to go home, I burst into tears. I wasn’t sad, but it was like the most profound relief I had ever experienced. To feel for the first time since I went back in that I was going to live. I cried a lot in the following days, even to the point where  a commercial for the live action version of ‘Charlotte’s Web’ made weep like a baby for some reason. I had learned from the nurses how to clean and pack the open wound in my stomach which was grotesque at the time. I am a person who likes to be in control of himself, and I do not like relying on others for things of this nature.

During my stay in the hospital because I could not digest food, I was put on an IV for nutrients. I’m a skinny guy to begin with due to these things, weighing normally about 125-130 tops. Without eating for the weeks that I didn’t have food by mouth, I had dropped around 20 pounds. I would go and look in the mirror sometimes and see how exposed m ribs and spine were due to the weight loss. I knew I had a long road ahead but these were the first steps. I had a wife I loved and wanted to be there for, and I had been given yet another chance to be alive, for that I was grateful.

Fast forward to today- six years later.

For the past six years, I have not had the easiest time. There usually isn’t a day that goes by that I don’t experience some pain or other issues. I dread going to sleep every night because I know the first thing that happens in the morning. I wake up in a lot of pain, I feel like I’m going to throw up, and I’m either constipated or the other way. Some days the pain tapers off after the morning. Other days it persists and gets worse throughout the day, to the point where I can barely breathe or walk. Instead of a pain that comes and goes, on the Bad Days, it is a constant, it doesn’t let up at all, and there is nothing I can do to make it go away. I just ride it out like it is a long wave and I’m waiting for it to crash on the shore. Most days like that end with me just passing out from exhaustion and hoping that the next morning it won’t be so bad.

I am fortunate enough to have a support system in my family who has helped me get through. But I will admit there are days were it is very hard. What they don’t tell you about is the depression, stress, and guilt that comes along with living with an illness like this day in and day out. Some days, I get so depressed by living this way. I’m not yet 30 and I’m terrified of living this way for the rest of my life. I feel guilt on the days I can’t do much that I am holding my family back. And the stress of knowing that just by laying down it will cause me another morning of pain makes for more depression. Sometimes I feel all of these emotions at once. I feel like people don’t understand exactly what I’m going through.

This is my upsidedown L of 2 scars. Or the stomach vagina from Videodrome

The worst part about having a severe issue like this is trying to convey it to others. If I had a broken arm, people would understand because it is an affliction they can physically see. It is impossible to tell someone exactly how much pain you are in when it is going on inside of you. You think sometimes ‘if I could only make them understand then they will see’, but we can’t do that. And sometimes just because we look fine on the outside does not mean that we are ok. Those of us who live with chronic pain like this are able to mask it, because it is what you have to do.

Over the past years, I’ve gone to the doctors and they haven’t been able to determine what caused this to continue on, and their solutions have been thus far to get me hooked on painkillers which I refuse to do. What they have not told me about is any supplements for what my body does not process. After doing independent research on others with this issue, I’ve been able to determine that I most likely suffer from SBS which stands  for Short Bowel Syndrome, which effects people who have lost most or all of their bowel and the symptoms are all of what I have. By reading up I was first made aware of the fact that I am severely missing out on the nutrients my body needs. So as of lately I have turned to vitamins and herbal supplements. They do help. I still deal with pain but when I take them I feel better than what normal is to me.

Now, the last thing I want anyone to think is that I am looking for pity. I am not. I am lucky, because I have a beautiful family, and even though some days are harder, I appreciate and am happy with all the gifts I have in my life. I always try to remind myself when I get really depressed that no matter how bad it gets, there is someone else out there who has it much worse off than me, and I should be thankful just to be alive still. I simply want to bring attention to this issue as it is not talked about or understood. There is no special day for people with this; there are no ribbons or bracelets. But for those of us who live with it we need to discuss it. To let others know what we go through to perhaps help them understand. And we need to have hope. Even in the darkest days. To never give up, no matter what, because even though it can be hard, life is truly beautiful, and there is so much joy to be found in it, even if we do suffer. My family gives me hope. I continue to wake up each morning. I live on.

For a bit of levity after that slog I’ll leave you with a few common phrases or things I’ve heard many times throughout my life:

‘Man, you are so skinny. You need to eat more!’ or ‘Oh, you are so skinny, you don’t have to worry’ or ‘I wish I was that skinny’

I eat a lot of food.  I just don’t properly digest it. I’m missing almost all of my short intestine and that is how I keep this girlish figure of mine.

‘Are you sure this isn’t just in your head?’

Yeah the crippling pain and sight of me clutching my belly and struggling to talk is actually me performing in an invisible play.

‘So, do you like, poop a lot?’

Sometimes it is like a barren desert, sometimes like the elevator scene in ‘The Shining’. For those asking this, do you want me to actually go into detail about this question people?

‘I had the stomach flu, so I know what you are going through’

No. No you don’t.

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45 thoughts on “What We Live With: My Story of Pain, Struggle, and Hope

  1. My god you are amazing to live with this each and every day. I cannot imagine how hard it is for you at times. I was in labour for 24 hours with my first child, yes just one day and I was ready to ask to have my head chopped off to escape the pain. I get ibs and it royally pisses me off. I am humbled. I am a coward.
    Wishing you much less pain, some answers and some good news for your condition in the near future. Keep Strong x

    • Thank you. It is a difficult journey, but it is my journey. And one that has helped me become a much stronger person, and it helps me appreciate what I do have a lot more. I just hope this can prompt some of those who deal with this to bring it up, because something needs to be said and heard about it. Thanks for reading and for comment

  2. Wow

    You know, it’s hard to understand the hows and whys of things from the confines of the human mind. I’m a believer that there is a plan and intelligence… a wisdom behind everything, even though the God we’ve been presented by traditional institutions is obviously a laughable joke.

    There is, however, an unlimited understanding of all things… it underlies every aspect of existence. Someday we’ll be privy to that, we’ll reconnect with it, once we cast off the mortal coil and are capable of a less limited comprehension.

    I’m also a believer that our energies (our souls, for lack of a better term) coalesce into physical forms again and again and again and again. In an infinite variety, in order to experience every possible aspect of life that we can.

    This time, perhaps for you, is a chance to experience illness.

    “Get Well” always seems so lame to me somehow. “No fucking shit” is a reply I would expect. I would offer this then, instead… just embrace this experience and learn and live and inhabit it. Your time as a princely stud surely awaits your next go round. 😉

    Hang in there bro. I wont hit the “Like” button here, cause it seems incongruous. But that was a brave post. Well written. Very personal. I’m glad you shared…

    • Thanks Fogs. I agree with everything you wrote. It makes you realize the strength you have inside you when you go through things like this. How much we can fight when we have something to fight for, be it life or family. I appreciate every day I go with less pain and a day I can run around and not feel like I’m going to die. I just hope my story can help others to express and understand. We all have our struggles, but hope is a good thing to have, no matter how dark

  3. I so admire your courage to share something so personal with people you either barely know or dont know at all. I also admire your strength in living with your ailments. You’re right, people can’t fully understand unless they go through it themselves, but by being open and honest about what you go through, you can help people grasp the reality.

    • Thank you Steph, it is something I don’t really like to talk about. Most people would never know because I’m really good at hiding it, but I figure if this helps someone else to open up than that is a good thing

  4. I completely understand.. I nursed my Mom through this same scenario the last 2 years of her life (don’t fret, she passed away from a completely unrelated issue.) I think it’s important you share this with others because many may have similar symptoms and like you said, no insurance gets you a 3 ring circus.

    i’m really glad I read this today!

    • sorry to hear of your mother’s passing. I’m sure having you there was huge for her. thank you for reading and for the comment

  5. Thank you so much for sharing your story. I hope in time you can find relief. My husband has dealt with some of this over the last few years and we’ve gone through the doctors not knowing what’s going on and pain that at it’s best is just not super bad. We also try to do our own research to find alternative ideas. He’s not dealing with nearly as much as you, so I can’t imagine how you get up everyday. All of us who read your blog certainly are glad you do get up everyday. Hang in there.

    • thank you Colleen. I hope you guys can find something to help your husband out as I understand how much it can take a toll on quality of life. Some doctors, in my opinion, are more interested in cutbacks from prescription companies than they are in actually helping their patients. All I can offer is that the vitamins are helping me somewhat, and I’m going to start looking into a diet suited to my needs. Thank you for reading and sharing your comment

  6. Seth your an angel teaching others how to behave I’m in absolute admiration of you dealing with all this at such a young age! Your family although wonderful supporting you are extremely lucky to have such a brave young man to be part of their family! I would be very proud if you were part of my family. Xx

  7. This is Tisha (Phil’s wife)-I just read your story and it was a relief! I know that sounds strange, but I’ve had multiple surgeries and abdominal issues. I think I can relate a little.
    My body likes to grow things unfortunately. I’ve got the same telling scar from bellybutton to pubic bone. Its been reopened repeatedly to do “just one more surgery”. I’ve had ovaries, uterus, intestine, and multiple tumors and scar tissue removed.
    Currently I’m dealing with a kidney stone as well (just a few wks since the last surgery).
    I read your line about masking the pain every day and I know EXACTLY how it is! You try to put on a face and just get through the day. It gets old. And yes-depressing, frustrating, stressful, and I too have dealt with the guilt of my family dropping everything and help me-the feeble one.
    Im a strong-willed, independent soul who prefers to do things myself as well. Thats what makes it the hardest I think.
    Hang in there and know there ARE others out there who share your feelings (and misery)lol.
    Take care!

    • Tisha- thank you so much for sharing your story too. It is nice to know someone else who understands what this does to your life. My thoughts will will be with you and Phillip while you recover. Thank you again for sharing

  8. Just to clarify, im not ‘liking’ what you are going through, just the fact you shared it…..if that makes sense……there is a good meaning behind this like! More so for sharing the photos, I hate having my photo taken at the best of times. 🙂

    • thanks my friend. I think the pictures help make it a bit more real. Most people, even some of those who know me well, don’t realize what I’ve been through and still going through

  9. My name Joann I struggle with same issues I have short bowel sydrome I was born twisted bowel ! I was fine until age 32 I had minor surgery done 2007 thought everything would be out work for 8 weeks well I was wrong I had so much scar tissue that doctor nick my bowel the speclist came in fixed it. I stayed hospital for week came home I started throwing up bile well what had happen my intestine got pinched off and died so my gut became septic! I am left half colon 8 inches of intestine left! I was on life support doctor did not think going make it God had other planes he gave me strength I had 3 kids and great husband and job I loved! I struggled to get my life back it is losing battle sometimes between pain and all side affects from SBS I am greatful for your post I rember when was same pole looking same as u but one thing I notice in pic was strength and fight to stay alive in your eyes!

    • Joann- thank you so much for sharing your story too. We just keep on fighting even on the hardest days. Thank you again

    • thank you for reading it. I see a lot of my friends post ‘FML’ on their facebook feeds because they got stuck behind a few red lights, I would take 100 red lights every day to have a day without pain

  10. Thank you so much for posting this. I love that you’re willing to talk about not only what you have to live with but also the depression that goes along with it. I deal with chronic pain also (but of a different kind and NOWHERE near what you’ve had to go through so I’m not complaining) and I know how difficult it can be for people to understand that although you may look fine, you’re not. I’ve also dealt with depression since I was a child and kudos to you for addressing that issue also. I’m a firm believer that the more people talk about things like this, the better it will be for everybody. You are incredibly strong. (((hugs)))

    • I find the hardest thing is trying to explain it to people who just don’t get it. The depression makes it worse, but you just have to push through. I choose to not be ruled by pain, I live with it not for it. Like I said too, it isn’t always easy, and some days it is much harder than others, but you just do what you have to to get through. Thank you for posting and I hope you can find some relief too

  11. God – this post (again, so well written as always!) is heart wrenching. You’d think (sorry to quote my mum here but) ‘in this day and age’ the medical profession would be able to give you a more permanent and positive solution. I can’t imagine how awful all of this is for you to go through, I think you’re inspiring the way that you just deal with things. Good for you. I hope that things get easier for you and very soon.

    As for those final quotations. Some people are just utter tits.

    • Thank you Katy. There are days when, I won’t lie, I feel like giving up. But I find hope in the love of my family and that keeps me going. I have too much love for life to let it control me

  12. Wow.. Kloipy, I wish you all the best in your life! With the best of health 🙂
    I happened to stumble upon your blog and I must say, I love it. You’re amazing. I’m subscribing 😀
    Take caree 🙂

  13. Seth, Thanks for sharing that with us. Even though I am your grand father I wasn’t fully aware of all the problems you have went through and are going through.
    I do remember the night my wife Jane and I went to the hospital to see you and Dee & Scott told us you were taken for surgery. Then the first time they let us in to see and hold you. You were so sweet and small with monitors all over your little body. But you were and still are a fighter.
    It is good that you are sharing what you went through. You have a great knack for writing and you should keep it up. One suggestion if you don’t mind, Black on white is a lot easier for some of us older people to see. Keep up the good work son, and tell your lovely wife and beautiful daughter I said hello. With love, Pap.

  14. It took me 3 goes to read that. I actually felt sick reading it, Kloipy. I’m humbled, ashamed of my own petty gripes and I don’t really know what to say.

    You’re a battler, that’s for sure. What was it Jason Nesmith once said… “Never give up, never surrender!” Don’t ever forget those words, fatty.

    Oh, by the way, I once had an ingrowing toe nail so I know EXACTLY what you’re going through…

  15. seth, I have kept in touch with your mom and grandma since you were born,,,,,,knowing all that you were going though, knowing what your mom was going through also watdhing her son having this………watching our family pray for you daily that you would be ok…….God is good……he has brought you this far and He will continue to carry you………..we will continue to keep you in our prayers seth……….love nancy shinsky (cousin)
    Im sure you are an inspiration to many people with this story thanks for sharing it.

  16. That was a compelling and inspiring story. I also suffer from chronic pain (very different than yours) and I know how out of control things can feel when your body seems to be working against you. You have much courage. Well written too…thanks for sharing.

    • Thank you for reading and for your comment. Regardless of the days that are really hard to take, I do appreciate my life. I have a beautiful family and friends, and I am happy to have the chance just to live.
      Thank you again

  17. Wow! That is a lot to deal with! I really hope it’s getting a little better and I like how even though there is so much pain you are thankful for your lovely and supportive family!

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